THIRD times a charm – tysabri infusions

When I started disease modifying drugs to control my multiple sclerosis it was pretty straight-forward. I was on what is considered the easiest intro drug, Tecfidera. It’s 2 tablets a day, one in the morning and one at night, simple. But my body wasn’t responding as we had hoped and my MS was still active, so we stepped up the game and moved to hospital administered infusions. This wasn’t a decision that came without considerations and it has taken time to adjust to the change.

When my neurologist and I first considered changing treatments, we decided to get a second opinion. I believe this is invaluable. A different perspective helps you talk through the options, the pros and cons, and I think lets you feel more confident and in control of the decision you make for your health. This second neurologist reviewed my files and felt the same way; we should be more aggressive. It was time to move to Tysabri. I was on board, anything to get me in control of my MS and reduce that activity and potential for damage, let’s do it.

My neuro went through everything with me. We talked about the risks with JC virus and that I would need regular testing. We went through the potential side effects and how I can get in touch to let her know asap when something is happening. I got in touch with the Tysabri nurse who let me know I can call or text her at any time. We went through the process; once a month I will go to the hospital to sit in a chair for 2 hours with a needle in my arm to administer my drugs so to take a book. I felt like I knew exactly what to expect, I felt prepared.

As the day drew near, I started to look forward to it. This was going to be 2 whole hours where no-one needed anything from me, where there were no demands on me and sure I was stuck in a seat with a needle in my arm but I didn’t need to do anything. I started daydreaming about taking the opportunity to read, or to catch up on work as things had started to get really busy and I could use an extra day out of the field to get ahead. I even started to fantasize about taking a nap! With a toddler who likes to rise before 5 am, full-time work out in the field, and fitting in as much exercise as I could I was still really running on fumes and so looking forward to a little nap.

Despite this confidence and feeling prepared, when I got in for my first infusion the seriousness and weight of what this entailed really hit me. I waited in a packed room, not necessarily anxious and concerned about how things would go. As I waited longer and longer I started to get a little nervous. When I was finally called in I was escorted to the infusion room. I hadn’t realised what that would look like; a room full of big chairs filled with people getting infusions for all sorts of serious conditions, iron infusions, chemotherapy, crohns management, various heart conditions, it’s terrifying. I looked around the room and saw many people who looked so clearly ill and it suddenly felt like I was there treating a very serious disease. Taking the Tecfidera tablet twice a day was like taking the pill, it didn’t feel so serious, but sitting in a hospital chair with a needle in my arm surrounded by some incredibly ill and vulnerable people shook me.

The nurse then tried to put in the needle and missed. She missed a couple more times and I broke down. Not because I can’t stand needles, not because it hurt, it was simply the straw that broke the camels back. The nurse was so lovely and tried her best to make me feel better. Then she came in with my drugs in protective gear that they don’t use for anyone else and it felt like I was getting something more serious and toxic than those around me and I was overcome. I felt silly for crying but I needed a moment, many moments to take it all in. I felt better when I left and certain that this was simply a period of adjustment and that next month I would be fine.

The protective clothing the nurses wear to handle my drugs

The second one came around fast. I felt even more prepared this time, I had been drinking lots of water in the days leading up to it to ensure my veins were juicy, and I was looking forward to that nap again. I got in the chair, got the needle in my arm, sat back and was overwhelmed all over again, I broke down. Around me again there were so many people who were being treated for those serious conditions and it made me feel the weight of my MS pushing me down into the chair. All those “what ifs” that flood your mind when you get diagnosed tumbled over me and I couldn’t help but lose control. Again I felt silly for breaking down, but then I took a moment to bring myself back and take control.

This is an adjustment, these feelings are okay and need to be processed, and this is a serious condition. But, we are managing it. I have MS, I can’t cure MS, I have made the changes to my diet, to exercise, and in consultation with my neurologist I took control over my disease modifying drugs and was more aggressive in my treatment.

The third time was the charm. I prepared with higher water intake in the days leading up to it, but I also took along a small hand weight to pump up my veins before we started – I wanted to ensure they put the needle in my wrist rather than the elbow joint as it frees your arm up for a lot more movement and comfort. I took along snacks, my book, and settled in. They put the needle in my wrist, I started reading my book, I felt calm and comfortable, and about half-way through I realised I was sleepy enough to take a nap. Yes! Finally! I snuggled into my blanket and pillow, closed my eyes and rested.

It. Was. Bliss.

I left feeling good, refreshed, and content.

It doesn’t take away from the seriousness of my situation, it doesn’t change that I’m sitting there with a needle in my arm being filled with an intense drug that changes how my immune system works, it doesn’t change that it would be great to not need this treatment, but my attitude to it can change. I needed the time to experience those emotions. I needed to take in the moment, have the breakdown rather than push those fears and emotions away, so I could overcome them and reset my focus. I feel in control and ready, I feel good and confident in the management of my MS, my mental health, and my physical health. Now, I’m looking forward to the next infusion where I get to take another nap!

One Comment

  1. Ok now who’s breaking down….

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